Friday, November 23, 2007

Conway's big, post-surgery debut was on Thanksgiving. It was basically the first time out other than to doctors appts. We packed lots of clothes and washcloths and two pies and headed out the door around 1pm. We got home a little before 9pm. He threw up all but one of the feedings he had while we were gone (frown). The worst was in the car on the way home. That time he threw up the tube out his mouth so we had to pull it out the rest of the way and get the tape off. Tearing the tape off is the most painful for him and at home we soak the tape in water to get it off easier. Couldn't do that in the middle of the backseat so we just pulled it quickly and applied pressure afterward. He soaked his outfit and carseat! He enjoyed seeing everyone and watching the commotion of it all.

His vomiting seems to be increasing again. It is almost like unless he is asleep and still the whole time he's fed and afterward he will throw up and throw up a lot. With him eating every three hours it is hard to do his therapies and practice and not have it induce vomiting. I have to try to do his oral practice at a time where he hasn't been fed within the last hour or so and isn't being fed because he usually gags during it. Same with physical therapy work. It's hard to do tummy time or any other movements of any kind anytime close to a feeding because he throws up. That would all be fine except that then you have to take into account the fact that he takes two long naps every day. So finding a time when he's awake and not hungry but not full is hard. I may try calling the doctor Monday to see if we can give him 150mL every 4 hours or so and that way he still gets the same total amount each day, just an ounce more at each feeding, but less feedings (probably doesn't make sense how I'm explaining it--I'm tired and it's late!). We'll see what she says, but at least that would give us more of a window to work with him at a "not-so-volatile" time.

Thursday, November 22, 2007

Make a joyful noise to the Lord, all the lands!Serve the Lord with gladness! Come into God's presence with singing!Know that the Lord is God! It is he that made us, and we are his;we are his people, and the sheep of his pasture.Enter his gates with thanksgiving, and his courts with praise!Give thanks to him, bless his name!For the Lord is good;his steadfast love endures for ever,and his faithfulness to all generations.

Wednesday, November 21, 2007

Connie had the "spatial sweep" test done today. He looked at outlines of several objects and tracked the objects up and down. The outlines got gradually thinner. Then he went into a dark room and right before the next test began he threw up his entire feeding. Carpet and all! In that room he looked at a screen as the administrator held little characters up to keep his focus. The screen had stripes that got progressively smaller. He wore little electrodes on his scalp during this test. It took less time than we anticipated because he was able to stay focused and look for as long as she wanted him to. He didn't keep pulling off the electrodes or eye patches. Basically, he was rewarded for his cooperativeness by getting out of there early! The trip wasn't without excitement though. On the way home, a car that was about four cars ahead of us spun out on the on ramp causing everyone to slam on their brakes. That landed us half in the ditch. Luckily, we were able to back right out and no one was injured and no property damaged! That's even one more thing to be thankful for this holiday.

Tuesday, November 20, 2007

We got back from Child Development where Connie once again showed off his progressing oral motor skills. He was able to take about 15ml of cold, apple juice flavored water from the syringe with a preemie nipple on the end. He never sucked the nipple, but would chew it a bit. He swallowed well and didn't keep it all in the back of his throat. Toward the end of 15 minutes, he had a big cough but was able to cough and didn't throw up. We moved on to some applesauce mixed in baby cereal. We just dipped the spoon in the cereal and rubbed it on his lips. He wanted to be the one to move it into his mouth. He did a couple of swallows and was receptive to the texture, but tired of the whole process so we stopped. We have an appointment to do the "swallow study" at St. John's on December 13. They will have him swallow some barium and take an x-ray to see where it's going to make sure he is not aspirating it. That is really the next step before we can move forward with increasing the feedings. At that time, we will know if it will be a matter of weeks or months before he is able to tolerate taking more food. If it looks like it will be months, the g-tube talks will resume, meaning that will likely be the course of action. If it looks like he may be eating a good deal orally by mid-January maybe, then we will just leave the NG tube.

Monday, November 19, 2007

Well, we left for Children's a little after 9am and once again didn't return until several hours later. We spent a whole 4 minutes with the opthamologist but the trip was over four hours! Connie and Mary Kathleen were great though. First we waited and waited to see him and when they finally called us back at 10:55 for a 10:10 appt. I was disappointed when it wasn't even a real MD or our doctor that saw us. He asked some questions and did some tests getting Connie to track toys and then he put drops in his eyes to dilate them and told us to go walk around and come back in 25 minutes. We did but they didn't see us 25 minutes later. We waited about an hour and 25 minutes and then got to see the doctor. He told us we have "great reason to celebrate" and that we "dodged a bullet" with Connie's seizure and that he has one more test he'd like to do to make sure, but he thinks Conway's eyes are not permanently damaged from the seizure/surgery. He said the only concern he has now is that Connie is "excessively farsighted for his age", meaning he works very hard to see things close up and that he wants to follow this. We see him again for a follow-up appt in mid May so he'll determine then if he needs glasses. I sure hope not. He did say that this was not related whatsoever to the cardiac condition, that it just runs in families. I am shocked because neither Greg nor I wear glasses. He seemed a little surprised that our other kids don't wear them given how farsighted Connie seems to be. Kinda makes me want to take them all in to be checked.Bottom line is that it was a great day. Another reminder of all we have to be thankful for. We go back Wednesday for the big hour and forty five minute test that will give him an even better insight into whether or not there is anything wrong. OT comes at 4:30 today and tomorrow is an appt. with Child Development speech path and OT to work on Oral Motor Skills at 11. Thanks for looking in.

Sunday, November 18, 2007

I should know better. Just as soon as I post that things have gotten better in the GI department, they get worse. He had a horrible night and was up until after 3am with reflux pain (I guess). He finally threw up a medium sized (we label it small, medium or big) amount and went to sleep. He slept pretty well until after 9am. This is unusual for him as he is normally up around 6 or 6:30. He threw up so much this morning that he clogged his tube with throw up and phlegm and we had to put in a new tube.

We have a busy week ahead with appointments. He's going to the opthamalogist tomorrow down at Children's and the OT comes tomorrow afternoon. Tuesday he has PT and the dietician is coming. I'm not sure yet when the home health nurse is coming. After the Thanksgiving holiday he'll start having OT on Tuesdays at 11:30 and PT on Fridays at 8am.

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention.In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old.He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.